At a recent conference entitled "Acting on AIDS" at the Institute for Contemporary Art in London, TAG's Mark Harrington was invited to deliver the keynote address. His remarks, "From Therapeutic Utopianism to Pragmatic Praxis: Some Transitions in the History of AIDS Treatment Activism," highlighted key developments in nearly 10 years of AIDS activism and are excerpted below.
A number of unique historical circumstances contributed to the outbreak of AIDS treatment activism in New York City with the foundation of ACT UP/New York in March 1987. Prior to the emergence of AIDS in 1981, there was an innate sense of entitlement to certain rights; middleclass gay men certainly felt entitled to these as well. For forty years, Americans had lived inside the antibiotic bubble, a period of time in which it was believed that infectious diseases were on the wane and that antibiotic chemotherapy could quickly be developed for new and emerging infections (as occurred with Legionnaire's disease in the 1970s). There had been nearly two decades of gay and lesbian political mobilization, using the civil rights model, and many experienced gay and lesbian activists were able to join a new movement focusing on AIDS. There had been six years of ground-breaking AIDS activism, including the foundation and growth of service-providing agencies such as Gay Men's Health Crisis (GMHC) in 1981, the invention and dissemination of safer sex practices, the establishment of the people with AIDS (PWA) self-empowerment movement. The introduction of the HIV antibody test in 1985, and its widespread use by people to determine their serostatus, without yet knowing now many antibody-positive persons progressed to AIDS, created a population of thousands of anxious but still healthy individuals who might be able to mobilize around AIDS if there were any reason to do so.
New York City was the epicenter of the AIDS epidemic in the United States, and by 1987 over 7,000 cases of AIDS had been reported; half had died; and between 200,000 and 400,000 were believed to be HIV-infected. The rapid development and FDA approval of AZT in March 1987 created a new climate of hope about the prospects for treating AIDS, combined with outrage over AZT's $10,000 a year price. Hope and outrage made for an inflammatory combination. Finally, Larry Kramer was between plays.
In March 1987, just around the time AZT was licensed, Larry Kramer gave a speech at the Lesbian and Gay Community Center in New York which led to the formation of ACT UP. Larry said, "Power means the willingness to accept responsibility," and those words had a major impact on our initial activism. ACT UP was devoted to "direct action to end the AIDS crisis" and our definition of direct action was an experimental, improvisatory one. Initially we tried a range of scattershot tactics, without any overall strategy. Among the elements and targets of ACT UP's initial activism were "zaps" and demonstrations about gay visibility, AIDS discrimination, drug companies, political leaders, the media and other AIDS organizations. Larry's motto, "drugs into bodies," was often chanted, but there was little organized activism directed towards achieving that goal.
ACT UPs spread like wildfire around the United States. They drew people into an exciting cultural and political ferment, with a new sense of community, collective power and joy. This went hand-in-hand with a good deal of intolerance to outside figures, including other AIDS organizations. ACT UP was like a religious movement in the following numerous ways. Our prophet was Larry Kramer. People with AIDS were saints and preachers while alive (Michael Callen, Vito Russo, Ray Navarro) and martyrs after they died. We had conversion experiences (joining ACT UP, going to civil disobedience training) and could achieve spiritual liberation by joining the community, ACT UP, which viewed itself as the "elect." Demonstrating and getting arrested were like initiation rites (baptism). We had separate congregations (affinity groups) which competed to carry out the most radical demonstrations. We had iconography ("Silence=Death," "The AIDS Crisis Is Not Over," "Read My Lips," "The Government Has Blood on Its Hands"), and we demonized our enemies (Ronald Reagan, Ed Koch, Stephen Joseph, Anthony Fauci, Ellen Cooper). Even our enemies could be redeemed if they "converted"; Ellen Cooper went from being an "Ice Maiden" to "Joan of Arc," according to Larry Kramer, who also elevated Anthony Fauci from "murderer" to "hero." Politicians, unlike scientists, were irredeemable. We regarded other AIDS organizations with suspicion and sometimes denunciation. The congregation of the "elect" met each Monday night at the Center and later at Cooper Union. We read our credo at the start of each meeting: "ACT UP is a diverse, non-partisan coalition of individuals united in anger and committed to direct action to end the AIDS crisis..." and we had our "Amen!" chant, which was "ACT UP! Fight Back! Fight AIDS!" We had our communion, it was "drugs into bodies." We had our messianic hopes: the cure was possible, it was just around the corner, we had to work incessantly to make it come faster. As Larry Kramer exhorted us in spring 1990, "We must make tomorrow happen today." In the late 1980s, we were in the grip of a therapeutic utopianism in which it did not feel naïve to believe that a cure was just around the corner. Together, we could make it appear. It was a kind of messianism.
At the same time, some of us were beginning to work on developing a more long-term, strategic focus on treatment research, and a unique form of direct action: treatment activism. This would inevitably change the kind of work ACT UP did, but wasn't initially apparent, because we were still on the outside of the research world. Later, after we'd broken into that research world and began to carry responsibilities there, conflicts would arise about whether treatment activism was a legitimate form of direct action at all.
ACT UP's Treatment+Data Committee was formed in 1988-89, starting out with a number of "drugs into bodies" access zaps, initially against individual drug companies and later against the FDA itself (and later still, the NIH). After 1990, T+D's tactical successes and its commitment to seeing them through created ideological and tactical stress within ACT UP. We'd won more power within research than other groups within ACT UP had won in other areas, so where was the cure? The inside-outside strategy (demonstrations followed by meetings) began to be questioned.
Demonstrations and zaps against drug companies would eventually lose their effectiveness; both the media and the industry became bored by them--it was expected, a sort of "Dog Bites Man" story. Some activists felt that T+D's focus on treatment research distract from struggles against racism, sexism, homophobia, capitalism and the New World Order. All the while, a relentless tide of death carried away some of the movement's most beloved, charismatic and inspiring leaders and members. AIDS was clearly not yet the "chronic, manageable disease" we'd thought, for five minutes in 1989, it might rapidly become.
Some ACT UP factions wanted to disengage from research meetings and didn't want to work with other community groups and activists. They interrupted conferences to protest two studies, ACTG 076 and ACTG 175. Rather than propose improvements to those trials, they wanted to "Stop 076!" and "Stop 175!" If they'd been successful, two of the most dramatic discoveries of the 1990s would never have occurred. Activists can impede research as well as improve it. By 1991, it seemed we were spending more time fighting other ACT UP members than fighting AIDS. In January 1992, the core of T+D left ACT UP to form TAG, the Treatment Action Group, so that we could focus all our energy on treatment activism.
A few weeks ago I called Larry Kramer for a peace talk. We hadn't spoken for several years. I asked him how his lover was, how his dog was, how his T-cells were. We started talking about whether or not we were at a turning point in the epidemic, and if so what to do. "But where are the soldiers?" sighed Larry. I thought about it. Are activists really like soldiers, where all you have to do it point them in some direction and say, "Go!"? Even if they were, where would we tell them to go, and what to do?
Activists aren't like soldiers. They're a self-selected group of people who feel a calling to do something to intervene. AIDS treatment activism is unlike other social change movements because our allies are biological as well as social, political, economic and cultural. Activists need allies among scientists, the press and in government in order to prevail. And activists, like scientists, must "listen to the data" and change course when new findings make it necessary: to be strategically stubborn but tactically flexible. Even if we are not at the beginning of the end of the AIDS pandemic, at least we may be nearing the end of the beginning. ACT UP had its time and served a valuable purpose; now there is a need for new formations.